My Life with Lymphedema

Introduction

When I was asked to do an article about my life with lymphedema, I thought that would be easy. I have found the opposite to be true. It’s hard to put into words a story of 52 years of living with a condition like this.

My life is an example of what can happen when lymphedema is incorrectly treated, or not treated at all. But it is also, I hope, an example of what you can do and what a full and exciting life you can have, even with lymphedema.

I was born in 1952 and almost from birth I experienced leg swelling. Like most people, I was taken from hospital to hospital as the doctors tried to figure out and “diagnose” what was wrong with me.

The Diagnosis

In 1959, I went to live with an aunt and uncle in a small Florida town. It was actually the family doctor that through examination and family history made the diagnosis of Milroy’s Disease. We had no idea of what to do or really what to expect.

Despite the leg swelling, I was an “all action” type of kid. I loved sports. I broke my right arm wrestling and my left arm playing soccer. I fell out of or slid down more trees, loved camping, fishing, blazing trails through the swamps, jumping off buildings; I pretty much did everything you shouldn’t be doing.

My biggest challenge would turn out to be the horrendous bouts of cellulitis that I would continually experience. The first attack hit in 1960 and the following week or so is simply a blur. The worse one struck in 1962 when they had to cut out a large greenish black blob from where my left inguinal lymph node should have been. That was followed within a few months by another terrible bout that for the first time really changed my life.

At that point, I was taken out of “P.E.” in school and there would be no more football, no more soccer, not even a bicycle. My aunt, was really so wise though. I soon found myself with microscopes, telescopes, chemistry sets, books, and a piano. These helped me a great deal with the sense of loss of my former activities. I also joined the band, choir, student council, and school clubs and became very active in other less “strenuous” activities.

Move to Oregon

In 1967, I moved to Oregon, where I spent what seems like a third of my remaining high school years in the University of Oregon Medical School Hospital. At least there were doctors there who were determined somehow to help.

Treatment included that wonderful old fashioned compression machine (pump), which didn’t work despite my spending months on it. In 1969, I was even in a study program, under a Doctor Stanley Jacobs, using something called DMSO to see if the would increase lymph flow by making the skin cells more permeable. During that year, I did have a successful surgery that helped correct one of the complications that I had experienced.

Nothing we tried worked, and from 1971 through 1973, I had three nine-hour Thompson procedures and numerous skin grafts. These were radical debulking surgeries in which a flap of skin was folded into the leg muscles in hope that fluid would be drawn into the deeper lymphatics. Needless to say, these didn’t work either and the surgeries have been now mostly reserved for the most dire and horrendous cases of lymphedema.

The next couple decades were actually fairly normal, despite the increasingly worse lymphedema and the always present cellulitis. I went to Switzerland to study for a few months. I was married, had a couple children, bought and remodeled a house and put in a 3500 square foot raised bed garden.

I was also involved extensively in the community and in political activities for the party I belonged to. In college, I served as student body president for one term at the community college I attended and served two terms as president of Portland State University where I eventually graduated.

In 1989, I moved to the Atlanta, Georgia, area. I immediately came under the care of an infectious disease doctor at the Emory Clinic, but even he still had not heard of any successful treatment for lymphedema.

It was in 1995, that my life really changed dramatically. I had a perfect red round spot growing on the calf of my left leg for many months. Since it presented no problem, I assumed it was some funky skin discoloration associated with lymphedema. When it was subsequently biopsied, it turned out to be Mixed B Cell lymphoma. In 1997, I was also diagnosed with idiopathic chronic leukopenia. For some reason yet to be figured out, my immune system had decreased by some 75-80%. All this was followed in 2000, by an ultrasound guided small needle biopsy of the right linguinal node that came back positive for another lymphoma called lymphoplasmacytic lymphoma.

The only treatment for all this was eight weeks of daily radiation on the original lymphoma spot in 1995.

During this time I also found out about decongestive therapy for the first time. But with the lymphatic cancers and infections, I have never been able to have it.

I Finally Meet Other Lymphers

The year 2000 was also significant for another reason. For forty-seven years, I had never met or even talked to another person with lymphedema. All this changed when I attended a conference in Atlanta sponsored by the Lighthouse Lymphedema Network.

It was a really strange experience. First, there was excitement because at last, there was a whole room full of people who had the same condition I had. But, it was also kind of anticlimactic because of the difference in the lifestyle that I had led, versus the ones led by my new-found friends.

Things started to get progressively worse starting in 2002. The last couple of years have really been a brutal time with constant cellulitis, many trips to the emergency room, hospitalizations and additional complications, like pleural effusions, and pain with fatigue at levels I never knew could exist. Last year lymphedema started in my left arm as well and the minor amount in my right arm always seems threatening to get worse. I have also spent many months on IV antibiotics to help control the cellulitis. Because of the new swelling in the arms, last spring I had a chest port put in, so no more arm IV’s or pic lines. The left leg is also now so hard, that ultrasounds just bounce right back without any ability to pick up blood flow or even a pulse.

I Join the Online Lymphedema Family

In 2003, I joined a number of online lymphedema support groups and now spend time posting on some thirty different sites. In the fall, I started working on a website called “Lymphedema People” and officially “opened” it up in December 2003.

The growth of the website has stunned me; as of this date we have had close to 79,000 visitors from 124 countries who have read more than 553,000 pages of information on lymphedema. During the past six months, we took the next step and began sponsoring our own support groups. We now have six through Yahoo groups. These include groups for lipedema, lymphangiectasia, a men’s lymphedema group, a children’s group, an advocacy group and one on lymphatic disorders. We also have information groups and sites on AOL and Google.

Last fall, I also started working with a legislative group from the Lighthouse Lymphedema Network. This fantastic group is working on treatment legislation for the state of Georgia. I also joined their board this January and am helping to create a website for the support group.

I am also still quite fortunate as I am able to continue working full time, enjoying my flower garden and doing many other activities.

Conclusion to original article

In conclusion, I would be a liar if I said lymphedema has been easy. It hasn’t, and at times it has been brutal with its complications and what it has done to my health. But if I could say only one thing to my fellow lymphedema patients, it would be to grab life, live it to the fullest and enjoy it! I have been able to do so many things that even “normal” people haven’t done and have had a blast doing it. Never give up, never quit, don’t accept a life hidden away dwelling only on with what you can’t do. Go for the gold!!!!!!!

Update January 29, 2006:

Since I wrote the article above, the lymphoma has progressed and I have started undergoing chemotherapy and more extensive lung draining for the pleural effusions.

(By the way, my web site, Lymphedema People, had approximately 386,000 visitors for the year 2005!)

Update October 20, 2006

Much has happened since my January note. This year has proved to be the most challenging year yet as I have started experiencing extensive all over body lymphedema. The downturn physically has been dramatic and quick and it has been a time of inner-searching and of testing of everything in me.

But, I really do still believe, that no matter how difficult life may be, there are still so many blessings to be grateful for and so many positive things we can be doing that make life worthwhile.

My website Lymphedema People has continued to explode throughout the world and we are excitedly awaiting our 1,000,000th visitor within the next 3 or 4 weeks. We now sponsor 12 online support groups in 3 countries and maintain a dozen medical blogs on lymphedema and related medical conditions. Our goal continues to be to minister to the needs of lymphedema patients everywhere and to make information available throughout cyberspace.

I continue my involvement with the Lighthouse Lymphedema Network and can’t say enough good about this wonderful organization that is making so much of a difference right here in Georgia.

This past couple months I have also become more involved with the National Lymphedema Network and have become a participant in the NLN’s Lymphedema Science Advocacy Program. I am also super excited about the new program called Parents Lymphedema Action Network (PLAN).

Also on the national level, I continue to support and serve with the Lymphedema Stakeholders as they stand for lymphedema patients rights at the Federal level.

Perhaps most the most exciting new news is the birth of my first grandchild. Connor Ryan Dant made his spectacular debut at 12:47pm on Sunday, October 15, 2006…with absolutely no sign of the hereditary lymphedema that has plagued our family since the 1800’s. A person couldn’t ask for a more special daughter, an absolutely fine young man for a son in law and for such a beautiful new grandbaby.

This too needs updating…stay tuned;-)

Update February 2007

Thought maybe it's time for me to share a little bit about what has been going on in the last few months withmy own situation and my personal battle with lymphedema.

Earlier this year, I started gaining fluid in the abdomen, chest and even my arms started ballooning on me.

It got to the point where I was almost incapacitated…very much unable to do even simple things like dress and put on my shoes without a massive and painful effort.

By the time I went to the NLN convention in late October/early November I was able to barely walk with a cane. God bles Joan White and Cheri Hoskins as they got me a wheelchair and wheled me around everywhere so I could get to and participate in the seminars and groups.

Another therapist Carmelita Rifkin was beyond wonderful and would wrap my legs morning and night. I would have never made it for a moment without these three “lymph angels.”

The week after the convention was the turning point. It finally got to the point where I could not even breathe without standing up. Sleep was impossible as was just sitting in a chair.

I went to the ER at Gwinnett Medical on November12th, 2006 and was immediately admitted into the hospital. I stay there until December 8th. The hospital crew was great and the doctors were so helpful. It kinda resored a little bit of faith in medical doctors to see these guys try so hard to help.

It was an extreme crises situation. While I was there, they removed some 60 lbs of fluid right off my ab/chest area. From my right lung they drained almost 3 liters of chylous fluid. The procedure is called a Thoracentesis.

I was transported by ambulance yo Healthsouth Rehab hospital where Dr. Paula Stewart maintains her pracice for lymphedema patients. I was there for a couple weeks.

Finally, I returned home on December 22nd…thinking all was going to quiet down.

Not.. ..on Decembr 27, I experienced a pnueothorax and was readmitted to Gwinnett for another week. That passed and I returned to work. While there they again drained some 2 liters of fluid from my right lung.

The doctors talked about a procedure called a pleurodesis wherein the fluid is removed from the pleural cavity and it is sealed off to prevent further fluid accumlation. In only three weeks another 2 1/2 liters have accumulated in the right lung and we still had 1 1/2liters in the left one.

That meant another week in the hospital. The operation went well and I resumed work the following week.

In the midst of all this, they also found my blood protein level had dropped to a castastrophic level. So I have had to be on this super protein diet.

We have not idea what actually started all this “lymphatic failure” but at least now the fluid is removed and we are doing whatever possible to prevenet it from occuring again.

All in all, I spent about 50 days in the hospital….….but got out for good behavior on Thanksgiving and Christmas.

I am doing much better now…but pacing myself, watching what I do an doing all I can to help the situation.

The very big plus was that I got to conduct little seminar classes for the student nurses on lymhpedema, what it is, how to recognize it and how it is treated. And I got to share an encylopedia of information with the doctors, most of which of course knw nothing about lymphedema. I give them much credit as they all showed a keen interest to learn and to gain as much knowledge as they could.

Still more updates to come:!:

Five Generations of Milroy's Disease (Milroy's Syndrome)

Recently, I have received mails regarding the chance of passing on hereditarylymphedema to children. I especially want to thank Jen too, for her recent post. Though I would put a “quickie” article showing how the lymphedema gene has been transferred through my family.

maternal grandmother (1881-1963) - generation one
lymphedema of left leg had 9 children without further complications of the lymphedema
as far as we know, she was the only one in her generation

mother (1927 - ) - generation two
mild lymphedema in both feet and ankles
5 children with no further lymphedema complications
temporary increase during pregnancy only
one of her generation with lymphedema

my generation (Pat) - generation three
from birth experience bilateral leg lymphedema
mild lymphedema of right hand starting as a teenager
mild/moderate lymphedema of left arm starting in 2003
one cousin with lymphedema, started in his late fifties
there are about 20 of us in my generation, my sister also has lymphedema of the left leg.

my children's generation - generation four
don't know how many there are - too many to keep track of
no lymphedema present in anyone
my two children show no signs of any lymphatic disorder

our children's children
don't know exact count - we are prolific:-D
Originally, I was able to report no lymphedema in this generation. Now, sadly that is no longer true. A nephew, now in his thirties has severe right leg lymphedema. It was found he had a double main vein in his leg and then the vein valves failed. The vein was stripped and eventually the leg started swelling massively. The tragedy is that my own nephew has chosen not to accept reality and get the proper treatment eneded for the lymphedema.

The lymphedema gene, though receding, evidently is still very much alive in our family tree.

Conclusion:

While it is possible to pass on the lymphedema gene, it does not automatically mean that offspring will exhibit or present with active lymphedema. In our family as the generations continue, it seems the lymphedema gene gets pushed further and further in recession.

ALSO: REMEMBER - I started a blog by the same name some five years ago and it should not be confused with any other site that uses that name in hopes of attracting followers. If it doesn't say Pat O'Connor, it isn't the real thing. Blog - My Life with Lymphedema